Summary: Tracing the story of the global struggle to make HIV/AIDS drugs more affordable and available, A Human Question raises key questions of whether private ownership of knowledge can be at the costs of human life?

Talks about who she has DISCLOSED ABOUT HER HIV STATUS in her FAMILY.
(Q : Do your parents know about your condition?)

In my family, my sister-in-law knows, and she encourages me a lot. I used to be scared of working, but she told me that I should start if only for my son. I told only one relative on my father's side, because I felt he'd be able to help me with buying my medicines. I used to take a hundred rupees from him every month. I haven't told my parents. They brought me up very lovingly, and even when I got married and had to do a lot of housework, my father would tell me that he made a mistake in getting me married to the wrong family. I never told them about my problems. Even now, I'm afraid that they might not be able to bear the news of my being positive, so I haven't told them.

Says that working at the center has not been a problem.
(Q : Has your working here caused you any problems?)
No. I've told people at home that I work here as a peer counselor, but not that I'm positive. I tell the patients who come here since I feel they might be motivated on hearing my story. But I haven't told anyone else.
motivation
peer couselor

COMMON PROBLEMS that PATIENTS have.
(Q : What are the common problems the patients here have?)
Financial difficulties. Some people don't even have the bus fare to come here. Positive people need good nutrition, but they sometimes don't have money for that either. Some people say they have problems at home, and so we tell them to bring their families here so that we can do family counseling. There are even some who've changed after this.
bus fare
common problems
family counseling
family problems
financial difficulties
nutrition
patients
positive people

Discusses the future and HIV STIGMA AND DISCRIMINATION.
(Q : Do you do home visits?)

I don't go. There's another person, who's away right now on a visit.

(Q : What do you think the future holds? Will discrimination and stigma decrease?)
It has decreased a bit. And I feel that it will go down even more. This is not a fatal disease like some others. There are medicines you can take to keep healthy and control your ailment. Some say that a cure is on the way. So I feel that people will give up their stigma
control your ailment
cure
hiv stigma and discrimination
home visits

Talks about the IMPORTANCE OF NOT LOSING FAITH for HIV POSITIVE PEOPLE.
(Q : Message to the viewers?)

I just want to say that positive people should not lose faith. They should come forward. Now ART is available free in Bowring Hospital, and many people are getting the treatment. The government should try to ensure that it's made available to all positive people.

(Q : How do you determine whether the people who come here will adhere?)
When people first come here for counseling, we tell them about how they have to look after their health. And they should also believe that they can survive with this illness. Then we give them the treatment. If they truly believe, then the medicine will definitely help them. If they don't really have faith in it, what's the point of giving any medicine? I feel that any person who is determined to stay alive will be able to do so in any condition. We tell them about the treatment and try to encourage them to live among non-positive people. Some patients tell us that they find it impossible to do any work, and some others say that they don't even have any education. But there are organizations to help these people, like how KNP+ helped me. So we tell them about these places and try to help them come forward.
adherence
hiv positive people
importance of not losing faith
knp+
medicine
treatment

Talks about one case where the patient died before ADHERENCE could be properly assessed.
(Q : Have you refused anyone treatment because you thought they wouldn't adhere?)
No. On one occasion, a very sick person came here and we did a couple of counseling session. Before he could come back, he passed away. That man only had biscuits and milk, and couldn't even eat anything. Nutrition is very important, and we felt that without good food, medicine wouldn't be able to help. We tried to see if he was motivated enough to take the medicines, but he died before that.
adherence
motivated
nutrition

Talks about SURVIVAL RATES and how they ASSESS ADHERENCE.
(Q : Of the patients you've seen, who's survived the longest?)

Mr Elango, the head of our rganization, has lived with HIV for 17 years. That's the longest I know of. There are people here who've survived for 10 years, 5 years.

(Q : Do you test them to see whether they are in a state to take the medicine?)
We look at their financial status during the counseling, also at how far away they live, and their mental state. If they feel, I too can live as a normal human being, then we can give them the medicines. We also look at whether they are likely to come for follow-ups, since this is a lifelong treatment. We give them dates for appointments, and if they turn up, then we feel that they're likely to take the medicines regularly. We also do a counseling session when they come for follow-ups.
assess adherence
counseling sessions
elango
financial status
follow ups
survival rates
travel

(Q : Is there anyone who's stopped taking the medicines?)

There are some who had a reaction to the medicine, and came back to us late, since they lived far away. Only 2-3 people like that. There are very few people who have reactions to the medicine. But not everybody has side-effects, and all others come back regularly.

(Q : Doesn't their coming here itself show a level of confidence)
Yes. People used to feel that everybody would find out about their infection if they came here. But that doesn't happen any more. They used to worry that the government would announce their infection to everybody, but that has gone too. We hold about 3-4 counseling sessions, it tells us whether they are likely to adhere to the treatment, and also alerts us to their family conditions. Once, we found out about other problems during the blood test. We wouldn't want to give the person ART as soon as they come here. That would be playing with their lives. So we tell them to come for the follow-ups, and then give the treatment.
Talks about ADHERENCE.
adherence
art
confidentiality
counseling sessions
follow ups
government
infection
side effects to the medicines
stigma
treatment

Shots of Bowring Hospital, and Bangalore city

CHANDRASHEKHAR introduces himself, and talks about the HISTORY OF BOWRING HOSPITAL and the ART CENTERS IN KARANTAKA.
(setting up, general chatter…) I am Dr Chandrashekhar, Professor of Medicine from Bangalore Medical College, and I am here Head of the Section on Medicine Department, and the Bowring Hospital is more than a century old hospital. This Bowring Hospital is more than a century old hospital, which earlier used to cater to the cantonment area people. And later it is, after the merger and independence, now the civilians also are being taken care of in this hospital. And since 1994, this hospital is catering to our HIV patients also. Because earlier, our previous professor was trained in management of HIV hospitals, and that's how this hospital was identified as one of the centres for rolling out ART management in HIV patients. So earlier, in fact every time, at any given point of time, about 15 to 20% of our medical patients, medical beds are earmarked for our HIV patients. So that way we have definitely a good experience in managing our HIV patients. And it's part of 3 by 5 WHO program. Government of India said that they're going to treat about1 lakh patients by 2007. So in that program, Bowring Hospital, as a government institution, they have recognised this as one of the centres to roll out ART in this state. It's the first centre in Karnataka, where we have started giving free ARV drugs. Subsequently two more centres have been established from August 15 at Mysore – Government Medical College, Mysore – and this is a unique venture where there is a government, public and private co-operation is there. We have Vivekananda Youth Movement and also the Government of Karnataka and KSAPS. They have jointly started this program of rolling our HIV ART management at KR Hospital, Mysore. Another thing is at Hubli, VIMS, I mean KIMS, Kempegowda, I mean Karnatka Institute of Medical Sciences. They are also in the field of ART management. These two centres they have started from August 15th. So they are the 3 centres who are catering to the patients who are affected by HIV. So that's the thing what is happening at this present.
1 lakh patients by 2007
ART centers in Karnataka
Bowring Hospital
The 3 by 5 WHO Initiative
bangalore medical college
cantonment
chandrashekhar
government medical college
hubli
karnataka institute of medical sciences
kempegowda
kims
kr hospital
ksaps
mysore
public and private co-operation
rolling out ART management in HIV patients
vims
vivekananda youth movement

BREAK…rolled out these free drugs for more than 300 patients in our centre. As of today, we have rolled out 3free antiretroviral drugs in our centre itself. And we have screened more than 1000 patients. Not only screened, we have registered these patients. And wherever there is a need for giving advice, we have given that. Wherever there is a need for giving drugs to prevent the opportunistic infection, we are doing it. And wherever the patient is eligible to get the drugs, as per the NACO guidelines, we are providing the drugs, after all our clinical examination and laboratory investigation. That laboratory investigation CD4 count is one of the major investigations we would like to look at it. And for that purpose, NACO has provided us the FAX machine, where it can estimate the CD 4 count, and on this basis we are able to take a definite decision whether to start the patients on ARV drugs. So in that way the centre is fully equipped to cater to the most of the needs of our HIV/Aids patients as of today.
Talks about what the ART CENTERS are equipped to do.
art centers
cd4 count
clincial examination
eligible
fax machine
free antiretroviral drugs
laboratory examination
naco guidelines
opportunistic infections
patient screening

Most of the patients are there through REFERRALS from NGOS.
(J : So are there also private patients here?)
No, all patients are referred. Since the time we have started, the NGO's are involved. The other institutions are also made aware of the existence of our ART unit. That way, whenever they find a person who is infected with HIV and they are in an advanced phase, they all refer the patients to our institution and we further screen these patients and take a decision depending on the patients' problems in this respect.
advanced phase
art unit
hiv infected
ngos
referrals

Talks about the work that is happening all over INDIA to achieve the goal of PROVIDING TREATMENT TO 1 LAKH PEOPLE BY 2007.
(Q : 1 lakh is only in Karnataka or all over India?)
All over India. In the first phase, 8 centres were selected. The high prevalence states and Delhi were included in the first phase. This started on April 1st, 2004. Later in the subsequent phase, other centres were also included. I told about Hubli and Mysore. Like that many more centres have started. Right now, as of today, there are 25 centres are functioning all over the country to cater to the front regions of the whole country. The main emphasis is more on high prevalence states, and now it is being spread to the other states also where they are all lessly vulnerable, less vulnerable states are also being covered in this. Our Honourable Health Minister is very much interested in the program, and they are trying to see that the program is spread out to the less vulnerable states also, so that everybody gets the benefit of this rolling out of free ART, this program.
delhi
first phase
health minister
high prevalence states
hubli
india
mysore
providing treatment to 1 lakh people by 2007
rolling out of free art

Discusses what happened with TREATMENT before the ROLLOUT OF FREE ART THERAPY.
(J : You said you'd been treating AIDS patients for the last ten years. What about the availability of these drugs?)
No, the government earlier, they had no provision to provide ARV drugs in this category. But they were providing the other drugs, like your drugs to treat opportunistic infections and also to prevent these opportunistic infections. Government of Karnataka has made provision for this, drug provision, like for example, the ___, double strength is one of the main drugs, which we use it for our HIV patients in the advanced phase so that they don't develop some of the infections which we commonly come across in cases of HIV patients. So that was being provided by Government of Karnataka. So that's how we used to look after. And the other infections, whatever there, they used to be admitted, we used to take care of them, and most of the times they were able to tide over this infections in these people. But there was no provision for free ART in this. Wherever the patients could afford, they used to start them on treatment. But they had to purchase the drugs from their own resources. That was the real problem all this time. Now since the rolling out, these costly drugs are made available free of cost to these patients. So most of our patients are benefited. That's the point.
advanced phase
costly drugs
government ofkarnataka
opportunistic infections
rollout of free art therapy
treatment

Discusses the kinds of PROVISIONS AND RESOURCES the GOVERNMENT and NACO has provided.
(J : Stocks?)
We have stocks for another three months right now. So, and NACO is making arrangements to see that another 6 months, drugs are made provided for, and extending further to the, whatever necessary number of patients who are likely to reach this centre. They are making provisions to provide these drugs. As far as NACO is concerned, they have conceived the program in a very systematic program and we are not finding any difficulty in getting the drugs. Not only drugs, men and material also. Because when we started the program, we were able to get the medical officer as, on day 1 itself. We had our research officer. That is how we could start the program with a good earnest from the beginning only. Similarly they had provided the lab facilities, whatever the necessary equipments. I talked about FAX machine. They provided probably by about end of April they provided this FAX machine. So that way it is a self-contained unit which can cater to most of the needs of our HIV patients.
drugs
equipment
fax machine
government
human resources
lab facilities
medical officer
naco
provisions and resources
research officer
self contained unit

Discusses the support the ART UNIT gets from the HOSPITAL ADMINISTRATION.
(J : So these medicines are also from there?) Yes, the drugs of ART are provided there. But the prophylactic drugs are provided from our main store, because the policy is to see that ART unit should not stand alone. It should be partly integrated to the whole system of our health care system. So in that way, we have all the support from the hospital administration, and we have health personnel being attached to this, the space is provided. And whatever other infrastructure facilities are necessary for our unit, the administration is providing. That way, we are able to have a smooth running unit.
art drugs
art unit
health personnel
hospital administration
infrastructure
prophylactic drugs
smooth running unit

Talks about the FEASIBILITY OF REACHING 1 LAKH PEOPLE BY 2007.
(J : Will you achieve the target?)
Probably a little more intense effort. Probably they…it is possible to reach out by 2007. Another we have, another two more years are there. Probably if you take the example of Brazil, they are able to provide free ARV drugs through the government resources to 1,13,000 people. See only Thailand has started this free program of providing ARV drugs. India is the last country and with 5.1 million patients being affected, definitely there is a need for it. So I think we can provide drugs by that, by 2007. That's mine assessment of the situation.
brazil
feasibility of reaching 1 lakh people by 2007
free arv treatment program
thailand

Talks about the PATENT LAW AMENDMENT and the kinds of resources that are being mobilized to procure SECOND LINE DRUGS.
(J : Patent law amendment…) I, I am not really sure about that. Still things are really in a fluid state. Probably whether they are generic drugs, they come into the category of generic, or brand drugs, so that's a (J : Next-line…) Next-line, that's a real problem right now. As, as far as I can look at it, we have the, second-line drugs are yet to be provided. We have recommended for providing the second line of drugs, because once the person develops a resistance to our HIV patients, HIV drugs I mean, ARV drugs, there is a need for a second line of drugs. So this is the time where we have to look out for these resistance to our first line of drugs, what we have. So in that way, there is a need for second line drugs. And NACO is at it. They are trying to procure some drugs which can help in these patients who are likely to be resistant to our first line drugs in this category.
arv drugs
generic
naco
patent law amendment
resistance
second line drugs

Discusses PERIODIC REVIEW MEETINGS.
(J : You have a connection to the other centres?) No, we have periodic review meetings. Two review meetings have occurred, all this time. So in the first review meeting, I think it happened in July or so, the last meeting was in December, we had a review meeting. Whatever mid-term corrections are required, they are able to do it also. And we had one more meeting, exclusively trying to look at it, of upgrading this centres. And then certification of these units. And to see whether we can take some initial action regarding identification of resistance of the drugs to our present HIV viruses. So in that way NACO is in that direction working on that path. That one.
NACO
certificationz
hiv virus
identification of resistance to drugs
periodic review meetings
upgrading the centers

The PATIENT LOAD is GRADUALLY INCREASING but it is not ALARMING.
(J : Did you expect more people to attend this program?) My, in fact we were little more apprehensive in the beginning. Since this was the only centre which was started, on April 1st, we thought we are going to have a big rush on day 1 itself. But it is not the fact. We are getting patients from all parts of Karnataka. And the number of patients are increasing, but not exponentially. Gradually they are increasing. Every month we are providing drugs to about 40 to 50. Last month we provided about 65 patients, like that. So gradually it is increasing, but it is not alarming to the extent than what we envisaged in the beginning. So we are able to cater to all our patients without much of a difficulty, this part.
alarming
april 1st
gradually increasing
karnataka
patient load
providing drugs

There are enough RESOURCES currently to handle the WORKLOAD.
(J : So right now, you have enough resources to cater…) But the present patients needs I think we are able to do it well. My department people are all trained, and my postgraduates are all trained in this. And that's the one advantage what we have. And most of the centres which have started. Because all the centres they are all government medical college hospitals, so they have the infrastructure to cater to these needs 24 hours a day, and they have the experience and expertise to make a diagnosis, early diagnosis. So in that way we are able to cater to these patients.
diagnosis
government medical college hospitals
infrastructure
post graduates
resources
trained
workload

Talks about HOSPITALIZATION and ART THERAPY.
(J : Is there a lot of hospitalisation after ART) No no no. The hospitalisation is not increased much. Since the ART centre started, more and more people are referred to Bowring Hospital. So in that way, there is a little marginal rise is there. But it is not a alarming rise in the number of patients who needed hospitalisation. Our policy is not to admit the patients who are, patients who are ambulatory, we allow them to say back in their places of residence. And if the patients have got advanced disease where they cannot look after themselves, or relatives cannot look after them, at that time we admit them, see that proper managements are done in these patients, and then we send them back to their patients. We have some centres where they are, care and support centres are there. They are able to give care to these patients where they have some problems, where they cannot look after themselves, they do it. But our centre, Bowring Hospital, we mainly think about providing our help to these patients who have got advanced disease with some medical problems. We are able to admit them and look after them in this part.
ambulatory
art center
art therapy
bowring hospital
care and support centers
hospitalization
medical problems
proper management

Talks about the NACO CRITERIA for the ART ROLLOUT PROGRAM.
(J : Is there an economic criterion for the rollout?) As of today, there is no economic criteria. NACO criteria is only 3 things – one is, the child who has HIV infection, who is in the advanced phase, phase 2 and 3, stage 2 and 3, or the mother who is covered under PPTCT program, if they develop an infection, that is the second priority. The third priority is people who are in the advanced stage of HIV, that is stage 3 and 4, and/or people who have got their CD4 count less than 200 cells per microlitre. So that's the criteria what NACO has stipulated. And we are following those criterias as of today.
advanced phase
art rollout program
cd4 count is less than 200
economic criteria
hiv infected child
mother
naco criteria
pptct program
stage three and four of hiv

More people are ACCESSING DRUGS and HIV STIGMA is decreasing.
(J : Do you feel that many people who are accessing this can afford it privately?) Probably they may not like to come to this institution. Because they think that there is a stigmatisation is there. As far as I look at the problems, this problem of stigmatisation is coming down, because more number of people are getting affected, and there is more, information is available in the media. And more than all these things, at least now, a fatal disease has become a chronic manageable disease. So that way, that fear feeling has gone. Now patients are coming forward without much of a problem. That's the point I'd like to stress here.
accessing drugs
chronic manageable disease
hiv stigma
information
private

Discusses the MANAGEMENT OF HIV INFECTION and the MISCONCEPTIONS that people have about ART TREATMENT.
(J : Some patients feel that if they take ART they'll die…) That's only a misconception or a wrong information. That is all what has happened. The other way around is also there. Once they know that they have HIV, they immediately think of this program and try to come to us asking for drugs. Because they think that all patients with HIV are provided drugs here. So in that way, there is a lack of information to the patients, because once they develop the infection, from the time of its getting into the body, virus, it takes minimum about 5 to 10 years for them to come to the advanced stage. Only in the advanced stage, where they require treatment for prophylaxis or prevention of these opportunistic infection, and still further in the later part, probably they require ARV drugs. Any person, in any part of the country, either in the rural or in the semi-urban areas, if they can keep their health and hygiene, the surrounding hygiene, properly, take care of their routine infections more effectively, that itself will go a long way in maintaining their health for a longer time, rather than thinking that ART is the panacea for all these things, in the patients. Even general practitioners can manage these patients. There is nothing extraordinary about management of these opportunistic infections. Whatever drugs we give it, for these opportunistic infections…for example pneumonia you take it. Pneumonia if affecting the lungs, we treat in the general population. Same treatment is given. Probably we may extend it for a longer time. That's all what is required. So in that way, the diarrhoea's routine drugs what we use it, can be tried in these patients also. So in that way, we, even a general practitioner with some knowledge about HIV, they can manage these patients at their level itself. And whenever they have these little advanced infection, specific infections probably, they will not be able to manage there. So those patients can be referred to this unit, or an advance tertiary care centre where the experience doctors in HIV, they are able to manage these patients in a proper manner.
ART treatment
advance tertiary care center
advanced stage
diarrhoea
drugs
general population
general practitioners
health
hygeine
infection
lungs
management of hiv infection
misconceptions
pneumonia
prevention of opportunistic infection
prophylaxis
routine drugs
routine infections
rural
semi urban
virus

Discusses the rate of FULL STAGE AIDS in INDIA.
(J : How many HIV patients in India really reach that full stage of AIDS?) Probably they are still in the middle path, I feel. They are, as I see our patients, they are not in a very advance phase. Probably it may take another 3-4 y ears to come with advanced stage. So that's the reason I think why we are not getting so many patients to our ART centres. That may be one of the reasons, because they are not in a full-blown AIDS phase. So probably it takes little more time, because it has set in late in our country. So it may take little more time for them to manifest with advanced HIV phase, AIDS stage.
art centers
full stage aids
india

Discusses the problem of YOUTH AND AIDS and why it is a concern.
(J : Are you worried about that?)
Of course. It's a really alarming thing. One thing is, they affect this youth population, that is this young age, where they are more energetic and they have all the vision of this, their life, earning phase. They have to plan their future. That is the time they get this infection. And once it is in advanced phase, they can't do their work. So that is a phase which really going to affect the whole economy of the country unless we take care of it. And with all our preventive measures, to see that spread of infection is reduced. So this is going to be a more dangerous problem to the whole economy also.
earning phase
economy
infection
preventive measures
youth and aids

Talks about whether HIV/AIDS is getting too much attention.
(J : Some say that we should be worrying more about TB and malaria…)
Now it's a part of a disease. A human being is afflicted. As a part of that, it is all our bounden duty to see that whatever is possible, we have to do that. We have more serious problems, for example you talked about malaria, you talked about tuberculosis. If you talk about TB, that has become all the more because of HIV. So in that way if you take care of these things, probably some of these infections also will come down. But one thing I will say that, the HIV infection has brought little more awareness about the personal hygiene, the behavioral changes, and the counseling part. Earlier we never heard about this counseling. Doctors used to counselthe patients about their drugs, and to some extent about the food habits. Now the counselors have become a part of our HIV management core therapy. They are able to influence these patients, about their behavioral changes. So in that way, probably in future, it may spread to other places also, where the counselors can be there, very helping hand, and them.
awareness
behavioral changes
counseling
food habits
hiv infection
hiv management core therapy
hiv/aids
malaria
personal hygeine
tb

(J: KSAPS said many women tested positive…)
No, not positive. It's a, high prevalence is there. The HIV positive in a high-prevalence stage is more. More than 1%. In fact, in our state I think it comes to about 1.65%, of our antenatal cases are positive. So they are being provided with drugs to see that the mother and the child are protected. According to these NACO guidelines they are providing the drugs. And this has spread even up to almost a taluka level also. District level, all districts have been covered. To that extent, the mother and the infant is provided protection in the beginning only. Sometimes, they do get these infections. For that, they will have to look for ARV therapy in these patients.
Talks about HIV INFECTION among WOMEN.
antenatal cases
arv therapy
district
high prevalence
hiv infection
hiv positive
mother and child
naco guidelines
taluka
women

(J : Do Karnataka and Tamil Nadu seem more high-prevalence because they have a better monitoring system?)
I, I may, I'm not in a position to comment on that part. Because sectoral surveillance is little different field. I'm more of a clinician, rather than an epidemiologist. Epidemiologists are able to talk about that.
epidemiologist
high prevalence states
karnataka
monitoring system
sectoral surveillance
tamil nadu

3 by 5 program
Discusses which states have the 3 BY 5 PROGRAM.
KARNATAKA, TMAIL NADU, ANDHRA PRADESH, MAHARASHTRA, NAGALAND, MANIPUR, DELHI, MIGRATORY PATIENTS, GOA, MID PREVALENCE STATE
andhra pradesh
delhi
goa
(J : Which states have the 3 by 5 program?)
In certain parts, Karnataka, Tamil Nadu, Andhra Pradesh, and in North, Maharashtra is there. Maharashtra. And then Nagaland and Manipur. They are this one. Delhi they have given to two centres. Because lot of migratory patients are there, population, so they are being covered. Rajasthan, Goa are mid-prevalence states in this category. So that's it. (Jayashree asks a question—inaudible).
karnataka
maharashtra
manipur
mid prevalence state
migratory patients
nagaland
tmail nadu